Dying Well

Talking about a Funeral When Everyone Else is Talking about Weddings

With all the excitement about marriage equality, it’s easy to forget that the dying is also a part of life. In a moving piece in The New York Times, journalist Dudley Clendinen has reminded us just how much joy life can hold, even when you know it’s limited. Clendinen, co-author of Out for Good: The Struggle to Build a Gay Rights Movement in America, was diagnosed late last year with A.L.S., or Lou Gehrig’s disease, a debilitating and ultimately fatal neurological disorder.

“At the moment, for 66, I look pretty good,” Clendinen writes. “I’ve lost 20 pounds. My face is thinner. I even get some “Hey, there, Big Boy,” looks, which I like. I think of it as my cosmetic phase.” However, not too far in the future, Clendinen will soon be trapped in his body, as it withers away mercilessly.

Clendinen, a former correspondent for the Times, has been able to handle the diagnosis with grace and good humor. “For 22 years, I have been going to therapists and 12-step meetings,” he says. “They helped me deal with being alcoholic and gay. They taught me how to be sober and sane. They taught me that I could be myself, but that life wasn’t just about me. They taught me how to be a father. And perhaps most important, they taught me that I can do anything, one day at a time. “

Clendinen says that he will forgo aggressive treatments that will just delay the inevitable. Instead, he has an exit plan when his health deteriorates further. In the meantime, he says, “I’m having a wonderful time.” Recently a friend brought him a recording of a Leonard Cohen concert, which include “Dance Me to the End of Love.” “That’s the way I feel about this time. I’m dancing, spinning around, happy in the last rhythms of the life I love. When the music stops — when I can’t tie my bow tie, tell a funny story, walk my dog, talk with [his daughter] Whitney, kiss someone special, or tap out lines like this — I’ll know that Life is over.”

In the meantime, though, Clendinen is showing the world what life is all about.

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  • christopher di spirito

    ALS is a terrible disease.

    When I read pieces like this, I become livid that the U.S. is squandering trillions on wars and not on disease research and treatment. I thought things might be different with the current nitwit in the White House but he is no better than his predecessor, giving us fresh wars in Libya and Yemen.

  • robert in NYC

    I agree Christopher. When you think that those greedy, selfish corporations who pay next to nothing in taxes realized a 47% increase in profits, their biggest in history, some of whom received stimulus packages (the big banks) and the GOP protecting them from any future tax hikes that could pay for decent fucking universal health care in this country for everyone and yet they have no problem funding obscenely expensive wars that are going nowhere. History always remembers the way a society treats its people. In the case of the U.S., we’re the biggest failure of all. The people just don’t matter, only the plutocrats and their oligarchy, the corporate elite.

  • christopher di spirito

    @robert in NYC: And now Obama, the DINO Dem that he proudly is, who extended the Bush-era tax cuts on the wealthiest Americans, says he’s prepared to give-in to the GOP’s request to slash current and future Social Security and Medicare benefits. All I know is, if you bought me a new Mercedes S600, I won’t vote to reelect Obama.

  • Fitz

    Everything is connected to everything..
    That there isn’t decent treatment for ALS is VERY directly related to the fact that all the major medical research is no longer done at publicly funded universities. It’s now all done at pharm labs, and ALS just doesn’t have the # of victims to make it worth it to one of these corp’s to bother investing in.
    I wish him a long healthy remission period, and a fast painless exit when the time comes.

  • Ernest

    The Founding Fathers warned us that “A house that is DIVIDED, can NOT stand”. They set the Declaration of Independence for a reason and if they were to see how America has become they would be disgusted! It’s no longer about America, it’s about the wealthy and them getting their ways. A time for change is now! We MUST as Americans demand they UNITE as one and work togeher and stop fighting against one another, or else there will be no more UNITED states!

  • Fitz

    @Ernest: The “House Divided” quote is from Abe Lincoln, not a founding father.
    The “Founding Fathers” would probably me disgusted with a lot of things…I understand (I think) your sentiment about the sadness of the state of “Wealthy Vs. Poor”, but this isn’t about wealthy vs. poor either. Even wealthy people who get ALS will die.

  • p connolly

    Thank you for your beautiful, but terribly sad story. You have been able to face having “Lou” with more joy in your life than my brother did. He was diagnosed right around his 64th birthday. He did have a gun. He lost all joy and hope for life with his diagnosis. That was 7 years ago, there still isn’t any change, there still isn’t any hope. I will forever be furious that our government thinks they have a right to make life altering decisions for us, a person should never have to choose to die alone rather than risking friends or family goint to jail (his choice, not mine). Project ALS, in NY, NY spends all donations on research, and the researchers have to play nice and share or they don’t get any grants, please check out their web site. That is were the majority of our donations go. My husband is a 4 time cancer surviror. He thinks it is nothing compared with ALS, with cancer there is hope. With caring thoughts for you, PC

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